I am so homebound with mom I rarely get out. I did get a nurse for the 23rd to do things with grandkids and daughter/son in law. But at 22.50 an hour that gets steep.I have lost interest in any hobbies I used to have...stress has given me health problems so I'm tired all the time. I spend most time in bed reading or watching TV and feel like I'm wasting away. I think it is getting to hubby seeing me like this. JJust want to know if there is anything I can do to "snap" out of it. I did get a "light therapy box" and it helps, but hubby noticed I am forgetting to turn it on.What do you all do to pass the hours and stay sane. I won't put mom in NH as long as she knows what is going on - it would break her heart. No relatives to help (although daughters family going to give me a weekend off) my friends have their own issues or are all to much in the social scene they would not consider helping and cramping their style.Any ideas I'm missing....there are so many of you on this board that are very intuitive.

47 Answers

Yes, 195Austin, they tell everyone they are fine - always. Maybe fear of the alternative - to admit they aren't ok is just one step nearer to a place they don't want to be.

SuetheQ - I firmly believe it 'what goes around comes around' but it still doesn't make things any easier when you cannot count on your family to tell you the truth - and to neglect your own elderly mother? Unconscionable!!! I told her this morning that her middle son answered my email about her TIA and said he hoped she was feeling ok now. She asked if I heard from YOU KNOW WHO and I said no. I know it hurt. But, he has never visited her much - even when she lived fairly close. One of the last times he and his wife visited her before she left the State - his wife wouldn't even go inside the house - she said it 'smelled.' I say roll up your stupid sleeves and go in and give the place a cleaning - she is OLD, just had a knee replacement and can't do it anymore! Instead, they chose to make his mother feel like crap. They still do. It is sad. Some things can't be fixed.

Oh my gosh! That is so bizarre! I tell my friends that as soon as "they" will make me emperor of the world I have big plans for your brothers' kind of people. I figure this is what God intended when he made the Sahara. Put a good electric fence around the sucker and we can dump them all there.

ah....here's a story...Had an agency sitter staying with my mom one day. This lady had hit it off with my mom right away. Very sweet, it had gone so well for so many weeks. I'd gone for a walk at the park with my friend that day. It was a lovely peaceful day in the middle of a phenomenally stressful time we had been going thru for weeks. We were sitting on a bench in the middle of the rose garden and i was feeling so at peace for the first time in weeks. THEN I got the call from the agency. The sitter had become confused about my return time, decided I was late, and just LEFT MY MOTHER ALONE to go home! It's shocking how quickly your blood pressure can peg out, isn't it? And yes I most certainly did call the owner of the agency later to have a little talk. But it took me 24 hours before I could calm down enough to do it. And yes, part of the conversation was who would NEVER again come to our house. When we go on vacation I have to have a back up plan for my back up plan of the back of plan. And one year we actually did run thru all of those.....while I was 3,000 miles away. Oh yeah, things are just peachy....

Gee, didn't mean to hijack the thread ya'll. Back to the subject that started the thread. Getting outside is huge in helping me cope. Even if it is just to step out on the deck and listen to the birds and feel the fresh air. But a walk in the park is awesome. You might need to take a fist full of kleenex to catch the tears. But I really try to look at it as being my trip away from the stress. I leave it at the gate when I go in. That one day.....didn't work so great! ha I have a handful of close friends who I know have given me a standing invitation that any time I need to go have a good cry somewhere where someone can keep an eye on me if I'm really close to the most dangerous edge of totally falling apart, I can go there. And I know I can call them if I'm in a tight spot for a caregiver. (and then there is the other little item your brother doesn't think about. Have had times when I needed my friends help and it happened to be when all 3 of them were absolutely unavailable at that moment with their own emergencies. Stuff like that just happens.)

My mother 93 is as sharp as a tack and I blame her for not telling my younger brother how she really is doing so of course he does not believe me when I tell him she is frail and encourage him to go see her once in a while.

Suethequilter - Such truth in your comment! I will share our experience last June with my husband's brother - who thinks that if mom 'looks' ok, she is ok.

My MIL's youngest son came here to stay with her while we went away for a week last June. We left on Saturday morning and without telling us know - he left THE NEXT DAY!. He had said he would be with her for 5 days and our kids were going to be with her the final two days.

My MIL had just been released from the hospital due to sciatica 4 days before, was on steroids, her blood sugar was running over 300 (she needed to check it 3 x a day and write down the numbers - which she forgot to do without someone to remind her), her BP was running high due to pain, she was on pain medication that made her dizzy and her legs were almost too weak for her to stand on due to the sciatica. He arrived Friday night and we loaded the car Saturday morning and as we waved good bye he said 'don't worry, WE will be just fine.'

We had purchased trip cancellation insurance and could have cancelled and gotten our money back - except he said 'go ahead' - 'WE will be fine.' WE???? Give me a break!

No sooner had we left - then HE LEFT. The very next day! We would not have known this except she called our son to ask about a medication and our son called us and said 'I think YOU KNOW WHO is GONE!' I am pretty sure grandma is home alone. Sure enough - mom told him she felt fine, that she could 'manage alone' and he left her and went to VEGAS!

He had to have known he had no intention of staying with her before he came down here - no one buys tickets to Vegas at the last moment and he left for Vegas two days after he left here. What kind of JERK does this to his own brother and sister in law - who have cared for his mother - without any help at all from him in 6 years???

Needless to say, I just about had a stroke when our son called us and we left our condo and came right back home. Lost our respite week, lost our money and we never even got an apology from the JERK! I don't think my BP has ever come back down to normal since. The next three months were spent going to doctors for spinal steroid injections. (each visit took 6-8 hours counting travel time).

He calls her once every month or two and has the SAME CONVERSATION every time and she tells him she is fine and that's it. He doesn't believe us - that she isn't fine.

You just gotta love everyone who always asks about mom and NEVER, EVER, asks how we are holding up.

My MIL can dress herself and deal with her potty needs but if left to her own devices, her meals would consist of crackers and milk, PB & J sandwiches, cold cereal or Lean Cuisine. She would forget her meds 75% of the time.

I don't think anyone can comprehend what it is like to spend so much energy trying to help someone to notice that the sun is shining. How dreary and morose it is to have the SAME conversation day after day after day - mostly about incontinence, constipation, diarrhea, pain, medications, people who are long dead or those who are near death. When she remembers people - she always remembers unpleasant things they did or said. :0(

This is our 'new normal.' Yes, it could be 'so much worse' and we can hardly wait :0(

My MIL waited two weeks to tell us she thinks she had a mini stroke. She told the bath lady last Friday who told her to tell us ASAP and she waited until yesterday. I asked why she didn't say anything when she was experiencing the numbness in her tongue, face and arm and she said 'I don't know.' I told her it was a medical emergency and that many people who have a TIA go on to have a major stroke. Her mother died of a stroke and so did mine. I kept calm and told her that I was going to report this to her doctor - she didn't want me to. Anyway, she is mostly fine (a bit of weakness yet in her arm) and now is taking an adult aspirin a day to thin her blood (guess that is fairly standard for this). So, now this new wrinkle.

I emailed her other two sons about this latest 'mini crisis.' The middle son at least answered back right away. Guess who we haven't heard from yet? You guessed it. Mr. Vegas - her sweet baby!

Thanks for letting me dump. It sure does release a lot of frustration! Thank you!!!

I definitely understand what you are saying Anita. There are days when you just have to make a conscious choice the moment your eyes open in the morning to stuff it and not dwell on the suffocating feeling by using all your emotional energy to think about something else. That's key...you can't just choose not to think about something, you also have to force yourself to concentrate on something different at that moment. It doesn't help at all that it is winter and you can't get outside, does it!

I get really steamed at times knowing that some peoples attitude is that hey, my mom can dress herself and handle her bathroom needs so it's not a big deal. She looks ok, so it must be that everything is peachy. Yeah... (My brother is one of these. He has been to visit her once in the past 3 years.) And I am educating people that they can just stuff the "well just think how much worse it could be" observation. When folks are having a bad day and going thru a time when they can get from where they are right now to "so much worse" in a literal fraction of a heartbeat, they do NOT need the reminder of what can happen a moment from now. Thank you, shut up already! Or are you really trying to push me over the edge, hm? sheesh! Of course these are the ones who have never been in our shoes. These are people I learn to just not talk to any more. And then there was this lady at my church (and yes she is one very strange duck to begin with!) who routinely asks how my mom is doing. No matter what answer I give, her response is the same, "well, she just wants to DIE you know. They all just want to DIE!" She's just plain creepy so I see her coming and go the other direction. If she does come up to me to talk, I just walk away. Rude, but self preservation, you know?

Our sitter is a local lady. She is elderly herself but very capable, has no family or pets at home and is thrilled to be of service to us. I found her thru a local pastor's wife. You might try a church and see if you can find someone who would love to minister; usually a much cheaper option than a nurse unless you actually need a nurse. While I have a contract job that is irregular and gets me out a few hrs a week, I make a point of getting out of the house several hrs a week for me - yoga and working out at the gym. Even with that I still feel like I'm in prison. In the summer, I work outside a lot. Hate to voice this but I'm at the place that I am not "glad" to be doing this job.

Rockinrobin - it is wonderful and RARE that all of you kids are willing to help your mom with your dad's care. Early on, it won't be as hard as it will be later. But, make sure you don't 'allow' the sibling who lives the closest and who has the 'qualifications' to end up with the majority of the support for mom and dad. That is easy to do and so unfair.

From a caregiver's perspective - the thing that I long for the most and get the least is 'relief' or 'respite' or a 'break' or whatever you want to call it. So, if you other kids can spend time with dad and allow someone else take mom out for the afternoon - that is always a welcome break for a caregiver. If mom isn't willing to leave him - try and talk her into it. If dad enjoys car rides - go together and enjoy your time together. Stop for ice cream or something everyone can still enjoy together.

If your sister who is the nurse ends up with the majority of the care-giving support for your mom and dad - make sure she gets a break from it - regularly!! Be sure to thank her! Ask your mom what she needs. If it is early - she may not even know yet. Keep asking.

It gets old real fast to be the one 'on call' all the time. So, offer your assistance taking him to the doctor, on outings, that sort of thing. Keep offering. Read some of the threads on this forum and you will be able to see and hear a 'theme' - act on that. Don't let your mom and sister do it all. It is so easy to do that - we all know how it is with 'out of sight, out of mind.'

Sadly, my MIL has 2 other sons who rarely call or visit and don't offer any breaks for us as her full time care givers. This is the case with many caregivers - I think. The other kids are more than willing to back off and forget about it. How sad. It just makes a difficult situation more difficult. I figure is another family member can offer 1 week respite per year - they still have 99% of their life as their own. Offer 3 weeks and you still have 95% of your life to live as you please. Do the math - don't forget to help. Your family is rare indeed. Your parents did something right :0)

I am sorry to hear your family is facing this sad and difficult situation. But there is support here on this forum. Take care of each other and spread out the burden - when it becomes harder to deal with. Many hands make the load lighter. :0)

Izabella, I am new to this site but have already felt a weight lift off of my shoulders. Now I don't feel the need to babble on like an idiot every time I can get alone with another adult, about what 'she' did today!

I so appreciate the non judgemental, understanding responses I have found here.

As babyboomers I guess we should have looked ahead and prepared better but hey, we never thought we would live this long, right? :-)

I am new to this thread.. but not this site.. and for my feeling of imprisionment this site has saved my sanity.. I can no longer leave the house much at all.. and I also have no help.. I miss spending time w/my kids and husband doing family stuff.. going to dinner..movies ect.. cant bring my mom because she tends to complain a lot! and I don't want to ruin everyones evening out.. so they go out and I am home day and night unless Im taking someone to a Dr. appt.. I dont even bother to put makeup on anymore.. I feel for what..I dont leave the house.. I feel guilty feeling like I am missing out on spending time w/my kids and husband..or feeling like life is passing me by.. because I know my mom needs me.. so..we watch her shows..(All in the family).. I do feel like my only reason to get out of bed is to answer all the same questions as the day before..cook..clean and then mentally be completely drained.. I wish I had some advice to offer.. but one thing I will say.. Thank God for this site!!!!!

My dad has recently been diagnosed with onset early memory loss and AD. He is 82 and lives with my mom who is the primary caregiver at home and she is 80 and has a heart condition and needs to take care of herself also. I am one of 3 siblings who are helping her and my dad. my sister is a nurse and she is the one sibling who is the closest to my parents. What can we as siblings do for my dad -other than taking him for a ride or another place for lunch or do an activity? And also to lend support to my mom? This entire thing is new for the entire family and we want to do the best we can for both our parents. Any help would be appreciated! Blessings to all that respond!

Just be careful that the older one won't trip over an 'overly active' puppy or dog. My MIL's sister's grandchildren (a mouthful) got her a Yorkie puppy - she is 89. NOT a good fit. She tripped over it twice and it had to go. So, match the personality of the animal with the older one carefully.

Yes, I think I did the 'spoiling' for a very long time. NOT GOOD. Her nurse told me I just HAD to stop hovering and ALLOW her to do what she could for herself even if it takes her a while. So, she dresses herself (unless a crisis makes help necessary - it happens once in a while - like when she had surgeries), she make her bed (I change the sheets for her), she does her own laundry (has her own machine) and does most of her own dishes - she has a small apt. attached to our home). I do the major cleaning and vacuuming. She isn't able to keep track of meds or checkbook - but I let her do what she can. I think I do most of the worrying :0) I pay her bills, keep track of Insurance, prescriptions - that sort of thing. I cook most all the meals and she reheats leftovers in the microwave sometimes. So, as long as they can do something without danger to themselves - we have to step back and and allow them to do it. It preserves their dignity.

We used to laugh a lot more than we do now. But, if someone sends me a funny email - I print them out for her and she gets a laugh too. She has so few things to laugh about - we need to help them find them.

OH, the UPS and DOWNS of care-giving. We all have them. But, sometimes I just wish I could go back to being just her daughter in law and friend - like it used to be when she was well. Those were good times. I have to try and remind myself of those good times and remind her too. We can all forget why we are doing this.

golfbhard - no, don't live in Florida - but my BEST dream vacation is on a beach anywhere in Hawaii :0) Therefore - the palm trees. :0) I'd take the Florida panhandle, too ha ha

Mom wants a pet a dog too but she's not mobile enough to take care of it except to pet it. I love cats and have had them in the past but before moving back in with mom -- had to get rid of my cats (mom's request. But after this 24/7 365 caregiving role has changed my position on pets. I don't want anything else to "need" me so sorry mom -- no pets! I would like to look into an agency that brings dogs over for therapy and then takes them home. Has anyone heard of a pet therapy for elders that brings them to the home?

19 years of caregiving??? I sure hope you find love this year, you so deserve it.Yes, animals help. We got a mini austrailian Labradoodle on mom's 90th birthday (he is in profil pic) and she loves him to death. She would never allow a dog in the house when we were growing up. He has given her and us a new lease on life.Oldcodger: do you live in florida....ie the palm trees. You said you dream of vacations..me too. I especially dream of the day we can move to Florida. I turned one of our bedrooms here into a Florida motif so when we move (if ever) It will be our master tropical suite there. Daydreaming positivily helps, it's just when the negative thoughts creep in. Now that I am unwell, mom is a little bit put off. I guess I'm not showering her with enough attention like normal. I am trying to make her do more things herself. She can dress herself....(sometimes changes clothes several times a day -oh the laundry!!!) But when it it time to put on new depend or pjs at night she holds her legs out for me to do it. So I started handing them to her and tell her she can do it herself. A nurse that came to the house told me there is a thing called "learned helplessness". I started waiting on her hand and foot and she is all over the house when she wants to be (likes to snoop) but will be right in the kitchen and say "I need water". I think I created a little spoiled mommy. Is that what we all do in caregiving....try to give too much? I'd like to know if any of you did the same, then we have created more work for ourselves.

not that I do any of these things but, maybe you like to build puzzles,or bake. Baking all kind of cookies is alot of fun. They'll never go to waste because everyone loves them. Maybe even get a pet. They always cheer you up. My mother in law was never a pet person, especially to cats.We have a 2 year old cat. She had kittens and we kept one. The kitten is 11 months old. My mother in law loves them. They really keep her entertained and keep her company. Her chair is near the living room door,so she lets them in and out ALL day. Granted my furnace never stops running ,but it keeps her busy!!! SO the point is maybe a pet will fill your time and it will show you tons of affection and love.

We are care givers - whatever that care entails. Whether it is in our home or in Assisted Living or a Nursing Home. If we care - we will show that we care and visit often and see to it that our loved one is cared for and never neglected.

Our loved ones' well being and OUR well being need to be considered equally when making these decisions. So often we go into something like this when things are fairly easy to deal with only to find out a few years later that the dynamics have changed dramatically and we just may not be able to handle it alone anymore - and so very often the care giver is doing it alone. It's what they call being between a rock and a hard place. And of course the care giver - the one who does the most for the loved one is also the one who gets the brunt of the ill will from the older one - the more independence they lose. :0(

But, I still say that when the day comes that we cannot or do not CARE for the loved one and everyone is miserable - that's the time to re-think things. Our loved ones deserve to be cared for by someone who really cares. I just hope I can continue to do this for as long as she needs me. I'll give it my best shot. But there may come a day when other arrangements must be made. And I know we should not feel guilty - but most of us will anyway.

Thank you for your perspective anne123 and your story. Sometimes we just can't make everything ok. We have to accept that.

Hi golfbhard! First, you're not alone. Judging the response on this thread, we're many in the same boat. I enjoyed reading the thread and can't help but agree with all the sarcasm, anger, rant, vent and many inspiring words, ideas for self-therapy to keep you level-headed & balanced. It's never easy this caregiving duties. I'm into my 19 years of caregiving for my mom. I'm an only child.And I'm also a single parent, so yes I'm sandwiched between 2 generations. I declared to myself that God didn't ordain for a family to be headed by one only. And that's me. So I prayed very hard and I'm taking charge of my love life and hopeful that one day I meet a man who will be the right one. He's not Mr. Right, he can be Mr. Alright. I've seen the toll it took on my mom when she remained a single parent all her life. It seemed she missed on live's many opportunities. So then, I don't want to miss the chance to get married, to say my "I do" so this year even though I'm stuck to my caregiving duties, I'm trying my best to find love outside of the 4 walls of my house. It's never easy as most parents are never friendly towards a lover/potential husband. They immediately think their daughter will be stolen from them & in case of my mom so dead scared she'll be left all alone. I feel like I've been imprisoned by my circumstances for so long now, it's time to break free. Thanks to this site, I feel less guilty when I look for my own needs and take care of myself. As my ex-officemate declared her mantra in life, I will imitate her, and declare that mantra too . Do u wanna know what it is? It's a very simple --- "I love myself." Take care of yourself, cuz no one will take care of it for you. Love & smiles to you & to my fellow caregivers!

I just have to chime in here and offer my two cents....Please, caregivers, don't feel guilty if you need to place your loved one in a nursing home. I have listened to many stories of people who waited far too long to take this step.....and their mental and physical health suffered terribly. There are no easy answers...you are caring for and loving your parent/in-law when you make arrangements for their care, whatever type of care that is. This week, a woman was telling me about how her grandmother had threatened to starve herself if certain wishes of hers weren't carried out. The woman knew it would be wrong to do what this grandmother wanted, so although it was hard, she stood firm and did not cave in. And the grandmother did stop eating and died shortly thereafter. But the woman knows to this day that she did what she had to do.

golfbhard - OH MY GOODNESS - you absolutely MUST take steps to help YOURSELF. Drink lots of water. Elevate your bed. Research natural remedies online and try a few. Digestive enzymes work wonders. Try Gluten free for a while. It really helps with bloat.

Something that I do every once in a while - if you have one near you - is go to a massage school for a massage. They do a wonderful job and cost half the price. Another way is sign up for Groupon or Living Social deals - if they have that in your city and they often have massages and spa deals for a fraction of the cost. I have done those too. WE DESERVE IT! Don't feel guilty for doing it either.

You absolutely MUST find something to enjoy and help you relax. Try to avoid surgery, if possible. Do something ASAP to zap your stress or it will literally eat you alive. Keep us posted. We are rooting for you. Ask yourself if you mother would want you to die for her. If she loves you and has her right mind - you know her answer. Sometimes we just can't keep our promises.

That reminds me of something that happened 40 years ago. When I was 23 years old (and had a 3 year old and a nursing infant) - my mother had a stroke and was in a nursing home. I begged my husband to go and get her (in another state). We did. We brought her home with us. It lasted 3 weeks. I lost 14 lbs. (got down to 95 lbs). I was up day and night. My poor mom didn't know night from day and felt like she had to use the commode 24/7. She was paralyzed on one side. She could still talk.

There were no services back then. No internet. No sites like this for support. It was the worst 3 weeks of my life. I had to give up or die.

She still had her mind and I talked with her and explained that I just couldn't do what I promised her I would do. It was killing me. She said she understood. It broke my heart but we took her back. She said she would rather be dead than back there - but she knew she had to go. She died 3 weeks later.

For MANY years I felt so guilty and felt like I had killed her. I think that is why I told my husband I would care for his mom now - to try and do for her what I was not able to do for my own mother back then.

But, I can see the day coming when I may have to give up again to save my own life. A person can only do so much with NO help or respite. My hubby does what he can - helps around the house and does what he can do. He just isn't comfortable helping his mom with her personal needs.

The thought of it is tormenting me. I go in and out of despair. Wanting to do the right thing and feeling 'trapped' by it. I know you all have felt the same.

But, in reality, whose fault is it? Is it anyone's fault when one person cannot do it ALL? When the rest of the family won't help at all, or,for many you, you have no one else to call on? It really isn't anyone's FAULT. We are only human. We can only do so much.

Right now I am still a thoughtful, caring person who loves her MIL. I have my visits to the 'black hole of despair' every so often - but manage to come out of it and continue on. When her condition deteriorates to the point that physically and mentally I can no longer cope or I am no longer a GOOD caregiver - I will stop being her caregiver. No one deserves to be looked after by someone who no longer cares.

When we can't do it the right way we should stop doing it. My two cents.

What good suggestions to all jhopson, kedwards, jane, anne, oldcodger,suethe quileter, francics, rlp nana, cattails, alivriam and SuzieQ....my name is Suzie also.

This is a great site helps destress. I I just got out of a 4 day stay at hospital on IV antibiotics for stress related gerd - aspiration pnemuonia. Temp 104.9. They want me (kind of insisting) I have this wrap surgery around esphagus (bad surgery). I'm resisting because I will be in more pain afterwards. I could not take care of mom then.Gastro told me today to drop 20lbs ASAP. I only weigh 135 but am a beach ball with legs. When stressed (always) my gut bloats up like I have an elephant fetus in there. Then aspriate. Guess where the stress comes from? You all feel it too.So starting weightwatchers tomorrow. Taking your advise about walking, forcing myself to rejoin my hobbies and take care of myself.We all seem to have the same issues and stories and can understand each others trials and problems. And you are right - our friends don't understand. My very BFF in the world is going through her husband having stage IV brain cancer and we do lean on each other....albiet she has it worse. He is feeling well and still working, but the threat hanging over them.I'm going to get out more if I can. Hubby is taking a day off next week so we can go to the Super Bowl festivities (not the weekend of the game) and we are going to get a nurse.Oldcodger, I too have woke up startled sure I heard my mom calling my name only to find out she was sound asleep.Yes, SuziQ - the guilt is devestating and we ask "why do we feel guilty" we are the ones that stepped up to the plate.....wish I could figure that one out.

Hi Oldcodger, Your story is exactly like mine. Bird feeder, forgetting stories, COLD and I'm sweating. I can't wait for spring so I can start my vegetable garden again. It's been nice enough here in California to take walks, to clear my mind. Showering is such a job. Once a week if she needs it or not. I won't take her out if her hair is all stringy and dirty. And she talks about other people with straight stringy hair and fat people, which she is all of the above. I hate it. I have a lot of energy, but no outlets. I want to take her to a senior center, but I know she won't go. I would have to lie and tell her we are going somewhere else. She thinks so highly of her 2 sons, but one didn't even come visit for Xmas and he was only half an hour away visiting his son. Her other one came but only stayed half an hour. I think she thinks I'm her enemy. Well, it's time to get into the shower and cry. Take care. All of us here needs to get together. If we only lived closer. :)

I have a friend that I think the world of. She is kind and caring. She listens. I can tell by the look on her face that she hasn't a clue of what I am feeling - not a clue. She spouts euphemisms and says 'she understands.' She doesn't understand. She just doesn't. I don't hate her for it. I didn't understand until I lived it. She won't either. We have to accept people for what they are and TRY to remind ourselves that they are TRYING to - but they just can't understand. The folks here on this site DO understand. They are living what we are living. We can help each other stay sane, stay caring. Take a deep breath and realize we were 'just like them' not so long ago. :0(

Have you looked in to Respite Services from your local hospital? If there is a hospital near you, it is more than likely that they have a home health department that can help you. Give them a call. I know when I had my dad home Medicare paid for Respite Care-there was also a program provided by the state for caregivers-they provided a small amount of money for the care giver and provided care for the person a few hours each week.Look into state programs-call your state's Council on Aging. The VA is also another resource for help, so is your local Social Services. They too have programs-things you may not be aware of. Do you have an adult day care or a senior center near you that perhaps mom could go to one day a week? What about your church-if you have one perhaps there is someone there who can come stay with your parent for a few hours. The Episcopal church for example, has a Stephen Ministry-volunteers that come to the home of invalids/caregivers to give support, time away, etc. There is help out there. It takes hard work to find it, but it is out there. Don't get trapped into the spiral cycle. Before you know it you start feeling like a prisoner, like life doesn't matter and that all there is to life is taking care of one person forever amen. Been there. It will swallow you up and destroy your relationships. Tell your husband and your kids to start looking for you. There is a way out. Life does matter-particularly yours. You have to be an advocate for your own life, not just that of your parent. I wish you the best. Believe me I have cried a bucket of tears thinking that my life was going down the shute. I realized after some very black days though that the only one who can fix the black hole syndrome, was me. And I did. I hope you will too. I mean to encourage you. You may have to take some happy meds for awhile-or if not, force yourself out of bed and into an old loved hobby. Small steps can save the day and your sanity. Get up and get dressed in something that makes you feel pretty. Fix your hair. Read funny stuff. Pray. Journal even if for five minutes-small steps that say you matter. I figured out that the best way to take care of my parents and their myriads of needs is to take care of me! And I take care of me by finding every resource that can help me do what I do best-care. Do you know that great music (not sad songs) can change the atmosphere in your home? Or that coloring with crayons and a color book can get you in touch with your creative self? Stay away from the TV. It is a passive aggressive assualt on your brain and your mood! It wastes your time Before you know it your are curled up in bed with 6 pounds of potatoes a box of hankies and twenty extra pounds for company. If you only have a ten minute breather, take it outside. Of if your outside is a noisy street, go in the bathroom, lock the door and soak your feet in the tub. No body bothers you when you are in the bathroom, lol! I am just saying, take time for you and take care of you, however you find to do it. It is lesson number one of caregiving.

I have used the word Prison many times too! My husband is an only child and I am the only woman in her life. Her long standing mental illness drove everyone else away. Her 2 nieces say she is their favorite aunt, but they won't even visit her. I think it reminds them that their mothers are gone. I don't know. One thing I have found is that when I let myself sink into feeling locked in a cage with her, I get overwhelmed with my own misery and sadness. I at least can run back to my house and force my husband to deal with her for a few hours. My therapy is being able to watch the sun go down with my dog & cat on the front porch of MY house. It is up on a hill in the country, while hers is in an old neighborhood in town, surrounded by trees & traffic. Cant even see the sunset, that's what I miss most. I have also refused to give up singing in praise groups at church & NHs. It renews me. "God inhabits the praises of His people"! It''s so much trouble to arrange BUT after I go, I feel so fulfilled! The other thing I know I should be doing in exercise! I haven't gotten faithful in this area yet, but am working on it. We have to take care of our spirit & body too! I don't know if you're able to leave her alone, but we decided to leave her alone with her lifeline button. I don't think she will ever push it, though. She has demanded to stay in her home, she wants to die at home . If I am here when it happens, all I can do is hold her hand. Therefore, I've released myself from guilt for not being there every minute. I love her and don't feel cold or heartless, it's just the way it is. God knows you have given everything you have and He loves you! Find your therapy moment, something you can get away and do to refresh yourself. Even if it's just a few (or one) hours. Love & Hugs to you. You still have sunshine inside you!!

All I can say is if I hear one more person tell me that 'you're doing the right thing and are a good daughter' I may let out that good loud long scream. Because guess what, I'd STILL be a good daughter if my mother went to a facility and I WASN"T doing this. I don't care what all these 'people who mean well' say!

Well, there is one other thing I do on really really bad days. A good old primal scream will let off some pressure. "Ah, okay, that's out, now I can go on." :-) Yes, I'm serious!.....whatever helps! When you're driving down the road, no one can hear you. For that matter, with people in the other side of the house and you are screaming into a waded up towel, no one hears.We went through a two year period with no break from caring for my mom. Hubby was having to save up every day of his vacation and sick leave time for recovery from a later hip replacement surgery, followed 6 weeks later with knee surgery. And both of those surgeries were out of town. During that two years both our children met their future spouses and married. We were largely cut off of the opportunity to get to know our future daughters-in-law and be as involved in the weddings as we would like. Also during that time is when our relationship with my skunk brother fell apart. And then during that time we were given the diagnoses of moms aortic valve stenosis and made the decision she was not a candidate for surgery. Horrible 3 year period there! Oh yes....we ALL understand the feeling like we are in prison, it will never end, we are alone, the guilt, the anger. You don't like to hear that others are also struggling/suffering (let's be honest!). And yet, my gosh it helps to hear other people voice your same feelings to know that you are NOT some horrible individual for feeling all of this but actually quite human. And to hear the testimony of others that we CAN get to the other side!

thank goodness I stumbled onto this site. i am caregiver for aunt who never married or had children. she had every detail of her life planned out except this! i have one cousin who is now her power of attorney but he and i have just had to step into this and take over. i am a widow with no financial resources. my daughter and her husband lived with me but after an intensely stressful 2011 are getting divorced. i was just trying to find a site to ask "what to do when the dementia PD patient doesn't think she needs help and you have literally given up your whole life for them. Feel guilty, Yes! Tired all the time, Yes! Just want to jump in here, thanks!

My husband and I are retired and living in Washington state. My father suffered a major stroke and now lives with us. He needs 24/7 assistance with all personal care and meals, etc. I went to our "Senior Information and Assistance" office and spoke with the person in charge of helping caregivers. I was hoping to get involved in a caregiver support group. The long and the short of it is, I was able to qualify for 30 hours of in home care and the cost to me will be 70 cents per hour. This was a very unexpected surprise, but it is possible because I am over 60 years of age, my father's primary care giver, and I have no personal income. My husband has an income and my father has social security only. This is not connected to medicaid, as I am the one who is qualifying, based on my income, for the support. I do believe you have to be over 60 years old to get this type of help. As you said, at $23.00 per hour, it is hard to afford in home care. We would not be able to pay for 30 hours per month so this is a God-send. Maybe your state has something similar. Good luck from a fellow prisoner.

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